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Cecilia
Before I was diagnosed with PBC, we were a very, very active and busy family. I had a full psychology practice. I was also teaching as an adjunct professor in the evenings. So I was working a lot, and I had my first daughter, who was 3, and I was also pregnant. My symptoms began shortly after the birth of my second daughter.
00:00:22:21 - 00:00:47:01
Cecilia
They began with mostly fatigue and extreme itching on the soles of my feet. I was bounced around from specialist to specialist. I felt like I wasn’t being heard. The final step for my diagnosis was going to a hepatologist. Unfortunately, the first hepatologist that I saw wasn’t the right fit for me. They assumed that I didn’t speak English and called a translator.
00:00:47:07 - 00:01:10:08
Cecilia
When this hepatologist finally came in, they didn’t even bother closing the door, didn’t sit down, didn’t examine me, just looked at me and said, “I know what you have. You have fatty liver disease.” I had all my medical records, all my labs, and I told them, “I don’t think I have fatty liver disease. My primary care physician thinks I have something called primary biliary cholangitis or PBC.”
00:01:10:10 - 00:01:39:19
Cecilia
After that appointment, I was really disappointed. I went home in tears, and I realized that I needed to find someone who knew the Latino community, someone who had worked with an ethnically diverse population. So I went on a hunt, and I had scheduled appointments all across the country. My hepatologist really is a unicorn. He values the patient experience and the patient word.
00:01:39:20 - 00:02:14:23
Cecilia
For individuals newly diagnosed with PBC, my advice would be: don’t give up — ever. Don’t stop looking for answers. Find a team that you feel comfortable with, the team that treats you with respect and that listens to you, and do your own research, and join as many support groups as you can, because that’s where you're going to find a community. I vowed that once I got answers, I wouldn’t let anyone else go through that experience again, and remind people that they can be their own advocates, and then they don’t have to feel like they’re less.
00:02:15:00 - 00:02:27:09
Cecilia
My name is Cecilia Dueñas. I’m a member of myPBCteam.
A primary biliary cholangitis (PBC) diagnosis can be life-changing. Cecilia Dueñas was very active with a full work schedule. After the birth of her second daughter, she started experiencing symptoms like fatigue and severe itching on her feet. These symptoms were just the start of her journey with PBC.
After a disappointing encounter with a hepatologist, Cecilia decided to research specialists to find one who would fit her needs. She focused on hepatologists who specialized in PBC and had experience treating an ethnically diverse population. With time, Cecilia finally found the right specialist to treat her PBC.
Getting a diagnosis for PBC can be difficult. It’s a rare disease, the symptoms aren’t very specific, and you may encounter other barriers within the health care system. For those living with PBC, Cecilia has some words of advice:
On myPBCteam, the social network for people with PBC and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with PBC.
Have you been diagnosed with PBC? What was your journey to getting a PBC diagnosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.
More Videos
Cecilia highlights the importance of having a trusting relationship with your PBC specialist and talks about how she approached a change in treatment when her current PBC treatment stopped working.
Cecilia talks about her life with PBC and how she made adjustments to manage her disease without sacrificing the daily activities she loves.
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Elizabeth Wartella, M.P.H.
is an Associate Editor at MyHealthTeam. She holds a Master's in Public Health from Columbia University and is passionate about spreading accurate, evidence-based health information.
Learn more about her here.
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